perspective

I set out on a mission this week to leave my house and do things as much as possible and by the grace of God I have but being thankful for what He allowed me to do is so hard when I now find myself crashing. It is such a balancing act that I haven't figured out yet. I was able to do things and I'm grateful for that but (there is always a but) I am not where I want to be. This week has been so hard, I want my life back, it will be 4 years next month and I am so tired of it I just feel like I'm barely holding on. My heart is sad about what my life has become, I would never have guessed I would be in this spot...again. God's healing hands saved me from the brink of death in a coma so many years ago and I just assumed that I could put it behind me and move on, and I did for 3 years but it all came crashing down in one day.

God can't be assumed. Obviously. It's hard to mourn the loss of the life I had and be thankful at the same time. My perspective has everything to do with it. I know God did not abandon me, fail me or hurt me and when I feel like that isn't true it is all on me. When all I feel is pain and heart break God alone is purpose, everything He allows is not in vain even though I struggle to find joy when I am so wrapped up in the troubles of this world He alone is Joy, hope, love, peace, healing and love and if I seek Him I will find it all. 

executive decision *subject to change*

My dad and I had a long conversation the other night and some of the decisions I had to make are as difficult as difficult gets.

1. First, my IVIG was denied twice by the insurance company. That is not happening, not worth fighting for in my case.

1. I have no doctors to treat me because I have seen all of the best specialists around and there is nothing that they can do. Thankfully God arranged for my IV fluid prescriptions to go until discontinued by doctor.

1. I only have the one doctor who knows how to treat POTS but she moved and she only answers on occasion and can only give me ideas of medications but can't prescribe and my current doctors are too scared of my condition to have anything to do with it's treatments.

• The Cleveland clinic has been discussed but they have nothing for me that I haven't already tried so it is pointless.

My vital signs not being horrible is weird and can change at any moment but it is hard to get doctors to take you seriously despite all of my secondary conditions. They only look at the clinical aspect and don't care how I feel, only how my body reflects it all. It tends to go back and forth so I never know what I am going to be dealing with. If it doesn't reflect they blow you off. Iv'e been working on this post for days and now all of a sudden this happens of course that's how it goes because nothing about Dysautonomia is predictable: NOTHING folks NOTHING.

                                                     ***5 mintes later 100/60**

• We are treating my condition with symptom control but we can only try to control the serious ones and the rest I just have to live with. 

1. Dysautonomia is not who I am, it's what I have and I am tired of letting it stop me from everything. I will do things when I can even if I have to push myself a little bit.

• I kept seeing new doctors thinking that they will have what I am really searching for (a cure) and I know I am not going to get that because it doesn't exist and I just end up hurt so no more new doctors for now.

• After all THAT please know I am NOT giving up. You may be thinking well where does that leave me? I have been writing this for days because I didn't want to admit that I am out of current options. It is hard to digest. I will no longer see NEW doctors (besides the allergist) I will just simply be. This is it, the life God has planned for me right now whether I like it or not and unlike doctors He does have the power to cure me if He chooses. He may not on this side of earth but He has broken me down to nothing and my one and only treatment is to fully, with every bit of my being, rely on God, as it should be. I am working on laying this at the feet of Jesus and trust His ways and find hope in the fact that one day my God will cure me because we have been promised that all sin and its consequences will be made clean. One day I will fly away and He will wash away Dysautonomia and all the hurt that comes with it but for now please pray that I will fully surrender to this life and find peace in the One who formed me and has carried me this far. He won't give up. Earth has no sorrow that heaven can't heal.

giving up

At times every part of my being wants to give up. Today would be one of those. I am lost, stuck, and confused with no doctor to turn too. Yes, I have the one I text but frequently she doesn't text back. I'm in a new territory right now that I have no clue what to think or do. For the past month my vital signs have for the most part been "normal" besides a few episodes. So you (and doctors) look at that and think wow I am doing great! Yeah um no. Not at all. Despite normal vitals all of my symptoms from it being low remain even though it's not.


How I feel does not correlate with my vitals and I'm being blown off now. MY WORST FEAR. I have 15-20 fuzzy head/ the beginning of a pass out episodes every day but my vitals don't match up. I am short of breathe, weak, no stamina, GI issues, sound sensitive, all of the symptoms I had before, I continue to have despite my vitals being decent.


I am not handling this very well, I'm alone, It's just God and me, no doctor wants to deal with me or even believe that my symptoms are real. It's weird to ask people to pray that they would go back to crazy vitals. Not too crazy like hospital crazy but to reflect how I feel so I can be helped by doctors.
I am struggling to keep it together and failing. The good news is I don't have too God can, will you pray for Godly wisdom and the right path to take?

dumping my heart out

I am having a really hard week and in these moments I tend to push everyone away including God. I'm just going to pour my heart out for you all. phew. ok. I got 3 years of being a normal healthy person. I don't know what healthy feels like anymore, I feel defeated. I can almost feel the war going on between God and the devil about my life and how I cope with it. Satan is sneaky as can be and he is attacking me in anyway he can, he knows my weaknesses' and man is he good at using those.


I have my  moments where I still run away from God but I've been working my way back for awhile now and I have found there is  ONLY one treatment for this syndrome. Just one. Jesus. He can take it all away with one word, speaking with power and making the enemy flee. Now He has no obligation to take this away, maybe his plan is for me to battle this for my entire life and if that is the case He is going to have to strengthen me, walk this with me side by side, and give me peace for the journey. He allowed this to happen so why would he stop being a part of it?! I know He is here but the pain is so raw and real to me right now. The tears fall today, IV's making pumping sounds, my feeding tube makes an even louder noise, I am on 25+ medications and just fighting to stay alive every single day and it  consumes me.


My only hope is in the hands of the God that created this body of mine.  My , peace, comfort, trust, faith, love,  and compassion come directly from the One who is victorious over death and eventually He will make this world perfect again with no suffering but in the meantime we are to stay in the fight. I am struggling to stay in this fight and the thought of being like this for my whole life is terrifies me. I don't know how to cope with this...forever. I just don't know.  I question God not on letting this happen but more so on why so much? Isn't POTS in itself enough? I just don't get it and it is incredibly hard to wrap my brain around. I need God to take over. I'm just discouraged.


I am asking for prayers AND encouraging verses to cling onto when I feel like there is no end.

You're shattered
Like you've never been before
The life you knew
In a thousand pieces on the floor
And words fall short in times like these
When this world drives you to your knees
You think you're never gonna get back
To the you that used to be

Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again

Beginning
Just let that word wash over you
It's alright now
Love's healing hands have pulled you through
So get back up, take step one
Leave the darkness, feel the sun
'Cause your story's far from over
And your journey's just begun

another day, another diagnosis

This right here is plaguing me. I have it frequently but it usually goes away in an hour or so. Not this time, day #3 of intense burning. The doctor confirmed today that it is mast cell activation disease and gave me names of 3 medications to try (as if I am already not on enough of them) but I have to find an allergist that will prescribe it. Basically, I am allergic to myself. Just another blissful day in my world.

grieve

I am struggling with every-thang in my life right now. Fall makes me cry. I love the temperatures and it is the only time I can do outdoor things but it also carries a deep sadness from memories I wish I could re-create.


Going through my pictures, I found some from the last vacation I went on. Forever long ago. I long more than anything right now to be sitting on this pier and talking about life with the BFF as we hear the fish jump in the water. Taking in the beauty of God's incredible creation instead of these walls and stucco ceilings of my cave. My soul longs for it's peace and quiet atmosphere. I need a getaway to here so bad but I don't think it is currently plausible when you live on social security. I'm gonna go cry in a corner while you view the pictures I am crying over. mk. mk.

epic breakdown

The last few days have been incredibly hard for me in every way and I lost it. Completely lost it. I am so blessed to have a father that loves the Lord and doesn't downplay my emotions. I texted him in that moment where you are rocking in a fetal position sobbing because it's more than you can take. He entered the cave and immediately sat down and said come here and held me as I sobbed all in complete silence. In that moment I didn't need words, a list of bible verses or the whole just trust Jesus lecture. I needed held when my life felt like it had shattered. I wasn't asking for a solution, just a hand to hold and a body to hug.


I couldn't even think, all I could spit out was that I can't and don't want to do this anymore and I feel like there is this tangible grasp of hope in IVIG and I can't reach it. I miss my "old" life more than anything and it's ok to be sad about that. It's hard to come to terms with and accept the different plan Jesus has for my life. I know He has far better plans that we don't understand through the hurt and pain. With everything I said; my dad's response was "I get that" and "it's ok to feel like that". "It's ok to grieve." IT'S OK TO FEEL LIKE YOUR FUTURE THAT CONTAINS ALL YOUR HOPES AND DREAMS IS FADING AWAY AND YOUR HEART HURTS OVER THAT". Maybe God's plan doesn't involve any of your deepest desires but God is still good and in eternity it won't matter. It's ok to feel things. God cried, Job cried and David cried out to our savior with despair and we can say that these prayers were not full of butterfly's and rainbows but of deep sorrow and pain. God knows what that feels like as he experienced it right along with us on this earth, leaving glory behind for our sake. I sure wouldn't have left heaven for a bunch of idiots but yet He loves idiots enough to die for them. (I don't) (just sayin)


 My dad wishes he could fix this but he can't and that is hard as a father who longs to protect His family but in this moment he can do nothing, I can do nothing. people can do nothing.Only my heavenly father can. My destiny lies in the hands of my creator as hard as that is to comprehend. I long to have Him in person, but because that is not an option I have to practice this thing called faith that I royally suck at. The sorrow, pain, defeat, isolation, the walls of my room, the IV's, the feeding  tubes, the medications, the lack of an immune system, the feeling like death when I take these meds in the morning, the new masks, the new gloves, the belly injections, the muscle spasms, the harlequin syndrome, the surgeries and the seizures plus plenty more all has to be worked through by faith in a savior that will redeem us and take it away in his timing. Perfect timing.


My current treatment IS HELPING AND I NEVER GET TO SAY THAT. I am encouraged that these autoimmune meds are working but  the side effects of them are something I never would have imagined. My immune system is being very slowly destroyed by these meds in order to stop them from attacking me and it's brutal. We keep having to decrease dosages but as a result it allows my body more freedom to attack.


Life is just hard. Jesus come quickly, your idiots need mucho help. (I cope with sarcasm and you are welcome to join in, I will not be offended despite the seriousness of my issues)